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PS: I've just realised that the final paragraph about the survey says this: You might also like to explain why you have not engaged with the NHS or applied for social care during this time (we know that some of you choose not to do so because of the lack of understanding about ME/CFS and...

It's an important point. I'm thinking about emailing them to say so – since it's not a survey with fixed questions, it's easy enough to respond by explaining why you avoid actually asking for help.

I think the deafening silence here may be linked to the fact that few of us have actually had any of these interactions in the last two years. I can't even remember the last time I discussed an individual ME symptom with my GP, let alone the illness as a whole.

Only just seen this thread, and the original article is no longer available – oh, God, I'd no idea he was a Sheffielder. I'm so sorry, we're not all like that! :laugh: And actually, Sheffield psychiatry isn't all like that, either. The four to whom I was referred in the 1970s still rank as...

AtW began in 1994, so it was pretty well established by the time I first applied in 1999 (I've used it three times). I needed an advocate as much as anything, and that's why I decided to try it. I was lucky in managing to find an OT who understood that she could have a wider role than just...

I seem to have been a static magnet all my flipping life. I get really big shocks every time I touch metal if I'm insulated from the ground, and I can see the arc of light too. I used to break photocopiers before I learned how to discharge it before I touched them – at work, I used to wear a...

I just meant comparing the fatigue to that of cancer and MS. It was really helpful when speaking to those I didn't work with directly, as people often have friends, family, or neighbours who've been affected. It was unnecessary for those around me, of course, as they could see my face going grey...

This can be a sticky one, but my feeling is that it's better to use examples that a range of people would understand, and not get too tied up with ME politics. For instance, we talk a lot about fatigue and fatiguability, but people without ME are likely to be much more familiar with the former...

I agree – I actually think attending meetings in person is preferable, even though it involves travelling and making yourself presentable in ways that aren't so necessary at home. You also have the pleasure of spending a bit of time with people and catching up with snippets of news (both...

Things that helped me: Having my overall salary reduced by one week's pay to give me an additional week's leave. It allowed me to use a 'half term' pattern so that I never worked more than six or seven weeks without a break, and I was able to adjust to the salary reduction easily as it was...

Fascinating! Thanks for posting it, @Colin.

Just seen Dr David Strain on BBC News 24, explaining why Long Covid is different to other fatigue syndromes such as CFS. Paraphrased: ____________________ With LC, it's like having an out of date smartphone; no matter how well you charge it up, the battery isn't in good condition and it...

I don't think we can, at least in many cases. A lot of common viruses cause a fairly characteristic range of symptoms, but unless a patient is worryingly ill and needs investigations, 'I'm pretty sure it's a virus' often as much as the doctor can say. There are even two viruses that cause...

I have it too, but I'm female and my doctor said it's much more common in women. Apparently, some people with it go on to develop autoimmune illnesses like lupus, but most don't. He said it might turn out to be useful, but they'd probably need to find a second clue that goes along with it before...

I think Dr Charles Shepherd of the UK's ME Association shares this lack of muscle pain with you. When researchers design surveys, it probably ought to logged positively in case it's an important clue (rather than glossed over as an unticked box because symptoms always vary between patients)...

I forgot about this one. Mine is more my hands and feet, but they're always blue in the evenings. There might be a straightforward explanation, but if I ate high-cocoa chocolate in the evening, my palms would go really deep blue. I no longer eat chocolate so I don't know whether it's still the...

What a great idea for a thread. I'll start with major impacts that are not on my medical record, roughly in order of impact (might need to add to it later): Having to remain 95% housebound to avoid exacerbations, and the preparation and recovery time needed for every outing Memory and...

A bit of an aside, but when it comes to research on what happens in the body during activity and the resulting PEM, the need to ask everyone to do the same thing always seems to be a bit of a stumbling block. Do you reckon this is always necessary, especially as it isn't really the same...

I think we need to take a cautious approach, though, since it's possible the broad phenomenon isn't even unique to people who go on to develop long-term symptoms. People making a slow recovery from glandular fever, who aren't familiar with PEM as a concept, may describe it the same way as ME...

I'm guessing it probably depends on what they want to assess it for? To model it, predict it, investigate potential causes of it, think about drugs for it, work out whether specific types of activity are more likely to cause it than others...? Different questions may need different levels of detail.